School’s out for summer!

Last week saw the end of school for another year with Max finishing Primary 4 and Lucia completing her Primary 1 year. And what a year it has turned out to be. School reports came home and made us beam with pride at how kind and helpful they had been, how hard they had worked, their fantastic achievements and, most importantly, how much they had enjoyed the school year.

The school they attend is simply fantastic. Their teachers and classroom assistants have cared for them so much through the tough times (including broken bones/extra lymphoedema swelling/falls) as well as teaching them all that they needed to know throughout the year.

They went to school happily most days (sometimes after being asked to brush their teeth/put their coats on 20 times!) and have really grown in confidence, ability and knowledge since September. They both make us burst with pride on a daily basis at the incredible little people they are becoming. We simply could not ask for more and truly have the two best children in the world! (Disclaimer: slight bias).

This was Lucia’s second year at this school – she spent an amazing first year in the nursery department which she loved and gave us a first taste of someone else looking after her needs. However, this year was her first ‘proper’ school year and anyone who follows the blog will know how nervous we were at the start.

However, she has had an outstanding year which has seen her learn to read and write, do addition and subtraction, made close friendships, took part in physical education, outside play, attended a school trip and took part in sports day – just like all the others in her class.

Not only did she take part but she also brought home prizes! She was presented with the prestigious P1 Literacy Award at the school awards assembly and won the bronze medal in one of her running races on Sports Day. Watching her racing with a big smile on her face and crossing the finish line in third place was just amazing!

The talent show

She also came third in the school Talent Show when she performed a little ballet routine to lullaby music (made up by me!) in front of over 400 children and teachers – this makes my heart want to burst! Knowing she has this amazing confidence to want to get up there and perform – and then actually doing it – makes me fill up just thinking about it. And, most importantly, she loved every minute. On the morning of the show she said the ‘butterflies are flapping in my belly but I am mostly excited!’. The butterflies felt like they were whipping up a tornado in my tummy that morning too! But off she went, eager to get on stage and show her moves!

She came out of school on cloud 999 never mind cloud 9, beaming from ear to ear saying over and over, ‘I just can’t believe it!’. I think this may have been the happiest moment of her little life so far and to see her feeling truly ecstatic and so proud of herself was an incredibly special moment. And Max was almost as excited as Lucia! He watched her perform and came running out of school saying she was brilliant, remembered the whole routine (he knew every step too!) and his smile of pride for his little sister was almost as big as Lucia’s!

‘I can do anything I want’

Lucia has achieved all of this in spite of her lymphoedema. Although her condition plays on my mind pretty much all of the time it doesn’t feature as a ‘big thing’ in her little life – which is exactly what we have been aiming for. She will say at times, ‘I have lymphoedema but I can do anything I want’ – and guess what? She can and she does. And not once has she ever thought she can’t. And this makes us immensely proud and incredibly emotional. (I am aware I am completely overusing the word proud in this post!).

Reassurance

We are also so thankful that Lucia has a wonderful assistant at school who has been there everyday to ensure all her additional needs are met. She pulls up her compression garments every half an hour and ensures they, along with her toe caps, are worn appropriately and comfortably, helps her get her shoes on and off, assists her at toilet visits, watches her in the playground for any trips or falls and treats any cuts and scrapes with impeccable care. She also supervises her at steps and stairs as Lucia is still wary of these and can tend to trip, as well as keeping her legs comfortably elevated under her desk. She is the most caring person who treats Lucia with such kindness that enables us to feel reassured when she is at school.

What we have learned this year

We have also learned a lot this year about how Lucia’s condition can fluctuate. She does go through periods where her swelling can be worse and during the school year she had a particularly bad ‘flare up’. You can read about this here. When this happened we were able to put extra measures in place during school to try and help this extra fluid build up – that was to always have her legs elevated when she was sat at her desk.

We always knew Lucia tended to tire more quickly than her friends and we could definitely see this during the school year. So we have had to carefully manage her fatigue levels by making sure she has proper rest time and elevation after school, only took on one activity outside of school – one hour of ballet on a Saturday morning – and gave her plenty of time to rest at the weekends in time for Monday morning.

She definitely seemed to pick up every illness going – it was just one thing after another – and even when she had eventually got over each thing she still always seemed to have a lingering cough or sniffly nose. Even now, with school finished she is currently fighting a virus of some sort!

Summer has arrived

But the main thing this year was how much Lucia enjoyed her school year, how well she was looked after and everything she has learned. Having her big brother there looking out for her is also a lovely thing and he would always give her a little high five if they passed in the corridor! Now Summer is here and with weeks stretching out in front of us we can’t wait to have some holiday fun together as a family. Bring it on!

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a little bit about us

Hello and welcome to Little Miss Lucia’s Lymphoedema Life blog! Lucia is my beautiful daughter, born on 12/03/12 with all ten fingers and all ten toes. However, her 10 perfect toes were puffy, as were her feet and legs. After months of tests and hospital appointments she was finally diagnosed with Primary Lymphoedema. Read More